Thursday, April 30, 2015

If you don't follow healthcare policy, you may not know much about the government stimulus package that has paid 30 BILLION dollars to get providers to use electronic medical records. One of the requirements is that FIVE percent of the patients they see must View, Download OR transmit their information at some point during the year (or quarter) for which they are asking for money as an incentive to implement these tools.

A couple of weeks ago, the Centers for Medicare and Medicaid proposed that we make that already very low bar of 5% and make it a single patient. So, the nurse in the office or the doctor or some other employee can log into the portal and that counts for a patient accessing the information. A single patient. I thought five percent was an insult as a patient, but 1 is really a direct slap in the face.

Here is my comment on the proposal. This is a very, very important topic. Please join me in commenting on the proposal (literally takes 5 minutes to write a short comment) about why we should push doctors to encourage patients to view their information. Patients find errors, avoid duplicate tests, have better understanding, know what they are supposed to do, remember things they forgot, and much more. Here is the proposal where you can comment. http://www.regulations.gov/index.jsp#!documentDetail;D=CMS-2015-0045-0001

I also started a petition on change.org to see if we can send a message. Please take 60 seconds to sign it electronically. https://www.change.org/p/andy-slavitt-centers-for-medicare-and-medicaid-give-us-our-healthcare-data

Here is my comment.

My daughter has a rare disease and sees 12 healthcare providers across 6 health systems. We have found errors in the records from almost all of them, and we have had many, many occasions where the doctors didn’t have access to recent tests or results. By giving the patient access electronically, the information can always be accessed from anywhere. I know the proposal says that a single patient means it is enabled, but medicine is very slow to change. If we don’t put pressure on the system to actually TELL patients about it and to HELP them understand why it is import and and how it can help them, we won’t have much improvement. Most people don’t know that they need their records until a crisis hits, and at that point, it is often either too late or then it is too exhausting to deal with being sick and having to navigate the web of getting records.

We need to be proactive in teaching patients about this when they aren’t in crisis. My mom was diagnosed with lung cancer and sent to a specialist out of state. Her doctor Fedexed the records to the medical center in Texas. When she arrived, they couldn’t find them. Thankfully, she had access to them on her iPad and was able to share them with the doctor. She didn’t know it was important to have them because she thought the doctors just had it all under control. Thankfully, her daughter knew it was important and made her have them on her iPad. If her doctor had encouraged electronic access, it could have been a win for both of them.

As another example, I had a CT scan where the radiologist made a typo. It was a very simple typo in which he wrote the word “not” in a sentence where it shouldn’t be there. Thankfully, the ER doctor told me what he saw so when I saw the report, I knew it wasn’t right. However, my GI doc who received the report wouldn’t have known about the typo if I hadn’t told him. Additionally, it wouldn’t have been corrected for future reference. Patients really can help if they are given access to the records.

I understand that doctors say that they can’t control patients and make them get access. I might even agree if the criteria were 100% or even 50% of patients. However, it is currently 5%. If you can't get 5% of patients to look at the information written about them, then either you aren't communicating the need well or you aren't offering the information in a way that is useful to the patient. In either case, the criteria of making sure at least 5% (and more in MU3 as we adapt), forces some behavior change. After all, this isn’t free money. It is money paid by taxpayers and it shouldn’t be simple to get. The point of the whole program is to stimulate change for the good of patients.

I have read some of the comments that people have put signs up, and I have seen many of those myself. They all make the portal sound like work. Then, when you log in, it is a view only environment with very limited information. We must make the portals useful if we expect patients to use them. Patients need to know how it will help THEM, and practices and hospitals need to turn on more features on the portal so that it is worthwhile to the patient. Without pushing the requirements, I am afraid these things won't ever happen and it is so very important that it does. Will you be one of the people who needs access and doesn't have it? Will it be your mom? Your sister? Your child? Please don't let down patients by taking the easy way out.

Monday, April 27, 2015

So, at the end of 2013, I said that I was so glad to see it go and that I was very ready for 2014. At the end of 2014, I was so happy because it was worse than 2013. Now, it is only April, and I am already regretting welcoming 2015.

So far this year...

Fractured my left leg and badly sprained the right (tiny hairline fracture but mainly a sprain)

Mike had an allergy attach that was an ER visit that started out very scary and me thinking about calling an ambulance.

Morgan fell and split her elbow open and had to get stitches

Regular infusions and appointments for Morgan's Dermatomyositis

Many more ortho appointments where I was non-weight bearing for over 2 months

Morgan's back pain is getting worse, so we started yet another specialist for her back.

MRI appointments for the back, more doctors appointments

My mom who had been fighting lung cancer suddenly got very sick with pneumonia, ended up in the ICU, and died on March 22nd.

I got a bad case of bronchitis right after her funeral.

Morgan had an ovarian cyst rupture which was another ER visit

Morgan got a bad sore throat and sinus infection

Amy got a sinus infection and a bad cough

Amy and Morgan both prescribed physical therapy 3 days a week

Morgan got meningitis from her IVIG and was admitted to the hospital.

Seriously. All of that in the first four months of the year. I am pretty sure that Blue Cross hates our family :(

I am writing this from the hospital, and I am even afraid to hope that it gets better. Surely, we are reaching the end of this bad luck streak?

I have so many things to write about, and I will try to write them soon. Some of the topics to address are: critical care units and family access, especially at the end of life, meaningful use patient engagement and the 1 patient change, end of life of a parent, and pain management in healthcare. I will work on these soon.

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About Me

I have worked in healthcare technology since 1996 when it wasn't very widespread. We all thought that EMRs would be common by the year 2000. HA. I strongly believe in the power of patients, and I work to make life better for patients and their families every day. I am a proud supporter of Cure JM, a nonprofit searching for a cure for Juvenile Myositis. I love the University of Tennessee and SEC football. I believe in family and cherish every minute I get to spend with mind.